I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.

Anne Ursu is the author of The Cronus Chronicles, an exciting and suspenseful series about a couple of ordinary thirteen-year old cousins who end up battling real-life Greek gods. Anne's writing is clever and imaginative, with a nice dose of humor, and I highly recommend her books to any pre-teen and teen readers (and grown-ups, too!).

I first heard of Anne several years ago when I came across a newspaper story when the first book of the trilogy, The Shadow Thieves, was released; the story mentioned that she had CFS. I e-mailed Anne to ask for a review copy of her book and to share my own CFS story. In a strange twist of fate, Anne found my blog and e-mailed me recently, not realizing I was the same person who had contacted her years before.

Anne's CFS story is a fascinating one. When I first contacted her, she had had the relapsing-remitting type of CFS for many years but considered herself lucky that it was relatively mild. She had long periods of good health in between crashes. By the time Anne e-mailed me earlier this year, she considered herself recovered from CFS, as she hadn't had a crash episode in a long time, but her husband had recently gotten mono and developed post-viral CFS. Today, her husband is undergoing IV anti-viral therapy and seeing some improvement. Anne still does not have the classic immune-dysfunction symptoms of CFS, but she has developed fairly severe Orthostatic Intolerance and is trying various treatments for that.

Now, here's the really cool part...Anne worked CFS into the plot of The Shadow Thieves (I told you she was clever!). The book opens with a strange illness affecting young teens, an illness that makes them feel so exhausted and sick that they can barely get out of bed. Sound familiar? Cousins Charlotte and Zee are determined to find out what is making their friends sick and set off on a quest which leads them to the Underworld. They battle against Greek gods in the Underworld and eventually make their friends well again...too bad it isn't that easy in real life, huh? Jamie and I read The Shadow Thieves several years ago when we were both much sicker with CFS, and we loved seeing this illness get vanquished by the book's hero and heroine!

In addition to The Cronus Chronicles, Anne has also written two grown-up novels, Spilling Clarence and The Disapparation of James. I haven't read the first, but I loved The Disapparation of James and passed it along to friends and family who also enjoyed it. Check out Anne's website for more information on her books.

NOTE: Another excellent novel by an author with CFS is The State of ME by Nasim Marie Jafry - the novel is about a woman with CFS, and I thoroughly enjoyed it.

Monday, September 28, 2009

I had another post planned for today, but I decided to put it off when I visited the Living Chronically blog and watched two amazing videos posted there. Since I don't know how to upload video to my blog (I could probably just click on that video button and figure it out, but I'm not well enough to learn something new today), I thought I'd post a couple of links to the Living Chronically posts.

The first is a powerful video story created by Laurel, a woman with CFS who is bed-ridden, to show at the recent CFSAC meeting. I hope the committee members were as moved as I was by her story; I was in tears. Laurel's story reminds me of a wonderful book, Encounters with the Invisible, by Dorothy Wall, a writer who was also bed-ridden with CFS (see book link below).

The second video is from a segment on CFS on Good Morning, America last week. It's a very good summary of CFS for the general public. Interestingly, though she doesn't mention this at all during her interview, Dr. Donnica Moore has a son with CFS. I corresponded with her a few years ago, and we traded stories. Her son and Jamie are the same age, both soccer players, and both hit with CFS at about the same time (I think Jamie's started a little earlier). Since then, she's become heavily involved with the CFIDS Association of America, and her son, Brian Bernard, is one of the people featured in The Faces of CFS photo exhibit that's touring the U.S. I've heard that he's doing a bit better these days, after an underlying Lyme infection was diagnosed and treated, though I haven't spoken to Donnica personally in awhile. She did a great job in the Good Morning, America segment.

Maybe we're finally making some progress in getting the word out about CFS - thank you to both Laurel and Dr. Moore for their excellent contributions.

Saturday, September 26, 2009

I decided to steal a feature from my book blog for my CFS blog. Another book blogger, That Chick That Reads, recently started Quote It Saturdays, where you share a favorite quote from a book. I keep a journal of favorite quotes, so I've been enjoying this new feature, but I realized that some of the quotes I write down are specifically related (at least in my mind) to the unique challenges of living with a chronic illness. So, I thought I'd share those quotes here.

The first one is from a wonderful memoir I recently read. In this quote, the author was actually referring to a break-up with a long-time boyfriend, but I think this quote perfectly captures the key to surviving any major life challenge, including chronic illness. Here, her friend is comforting her:

Then, paraphrasing Swedenborg, she said, "There is nothing that happens out of which good cannot occur." I stood beside her car in the summer sun. Some lessons take their time to seep in, but this one struck suddenly and fully with the force of a revelation: what mattered was not what had gone wrong in my life, or even how horribly wrong it had gone, but that something had delivered me to a new shore, and now I had a choice about whether I would embrace the new land or stay right where I was, resenting the ferry that had carried me.

Tuesday, September 22, 2009

Only Tuesday? Really? Whew, I'm pooped. Ken left at 5 am Monday morning for a week in Texas, so I'm on my own this week...and it's a busy week.

The toughest part is getting both boys to school on time. Ken normally handles the ultra-early high school run, so I'm having to get up at 6:30 am this week. I'm turning the light off at 9:30 each night, but I'm still worn out by the time I get the boys to school! Lots of stuff going on in the evenings this week, too. Although Jamie skipped soccer practice tonight because he's worn out, too.

Ironically, after posting last week about treating sleep dysfunction, Jamie's struggling with his sleep. It's possible that his dose of nortriptyline isn't enough any more (he's grown so much in the past 2 years!), so his doctor conferred with Dr. Rowe at Johns-Hopkins and said he can try trazodone (which works for me), if he needs to. We'll see. First, we're trying taking the nortriptyline earlier in the evening and moving all his Florinef to the morning (according to the doctor, it can be stimulating). I hope he's able to sleep better tonight.

Meanwhile, after the evening rush hour - picking up kids, dinner, dishes, washing out Gatorade bottles, getting lunches ready for tomorrow - I'm feeling a bit of the blues creeping in, which I think is just a sign that I'm worn out. I need to tread carefully! I really hope to make it to my book group meeting tomorrow night, so I plan to take it easy during the day.

Wednesday, September 16, 2009

I'm doing much better this week - my two-week long crash seems to have finally ended - but last night I had the worst night's sleep I've had in years! No idea what went wrong - I took all the same bedtime meds I take every night - but I was up about 8 times during the night to go to the bathroom. As my doctor once told me, "You're not waking from a sound sleep because you have to go to the bathroom; you're going to the bathroom because you're not sleeping soundly." So, this seemed like a good time to write about the sleep dysfunction that plagues just about everyone with CFS.

The most common question I get asked is how to treat sleep problems. I've explained CFS's sleep dysfunction and linked to articles on treatment in dozens of e-mails, so I figured the topic deserves a blog post. I'm certainly no expert, but I've learned a lot in my 7 years with CFS and my current treatment plan provides me with natural-feeling, sound, refreshing sleep about 90% of the time (last night was an unusual occurrence).

After a year of searching for answers when I first became sick, I finally stumbled onto the doctor I see now. She's a local family doctor, but she has several other CFS patients and recognized it in me almost immediately when I showed her my year's worth of charts and graphs! Once I learned a bit about CFS and saw that it fit my symptoms perfectly and was, in fact, a real diagnosis, I went back to see her. She said, "Now that you feel comfortable accepting CFS as your diagnosis, are you ready to try some treatments?" Was I ever! She told me, "The first step is to treat the sleep dysfunction. Correcting that and getting you good quality sleep will improve all of your other symptoms."

She was absolutely right! Getting good quality sleep reduces pain, improves immune function, often vastly improves cognitive functioning, and, of course, reduces fatigue. The key is to correct the root cause of the sleep problems, not just mask them with sedatives.

There are many kinds of sleep dysfunction in CFS patients, but the most common is light sleep, where you never hit the deep stages of sleep (Stage 3 & 4) required for restorative sleep. The reason behind this is simple. The endocrine system (which produces hormones) is dysfunctional in people with CFS. In a healthy person, the body naturally produces more dopamine and serotonin in the evening, as it gets darker. These two hormones are released in the brain, causing the normal progression of all of the stages of sleep, including deep sleep. Without enough of these hormones, the brain stays in the light stages of sleep.

So, the key is to increase levels of serotonin and dopamine before bedtime. There are many medications that do this. I know that some people don't like taking "sleeping pills," but these are not sedatives; they are medications that merely help to mimic what a healthy body would naturally do. The medications that do this are formally classified as anti-depressants, but don't let that deter you. When used in small doses, they lose their anti-depressant properties and help to treat sleep dysfunction by increasing serotonin and dopamine.

The best approach is to share these two articles with your doctor and use them as a guideline for deciding which med(s) to try. The chart attached to the CFIDS Chronicle article is particularly helpful. It usually takes some trial and error, and everyone is different. Start with very low doses and slowly work up. If any medication has side effects that you don't like, try another.

In my case, my doctor first tried amitriptyline. I started at the lowest dose (10 mg), but it left me feeling groggy in the morning, so we moved on. Next I tried 50 mg of trazodone (Desyrel), and that worked very well for me for awhile. I was thrilled to be sleeping again, soundly through the night, and waking up feeling rested and refreshed. My doctor was right - it made a big difference.

After awhile, the trazodone didn't seem to be working as well, so we increased my dose to 100 mg. That worked well for about a year. When that dose started to become less effective, I consulted with Dr. Bell who recommended adding a different medication rather than increasing the dose further. He and my doctor advised trying nortriptyline (Pamelor) which is available as a liquid so that the dose can be adjusted by minute amounts. I have stayed on this combination of trazodone and nortriptyline for several years now, and it still works well (last night not withstanding!). I can adjust the nortriptyline dose if I need to, and I have found that small changes make a big difference. Most nights, my sleep feels normal, I only wake up once during the night to use the bathroom (if at all), and I wake feeling like I got a good night's sleep.

My older son, Jamie, also takes nortriptyline (on its own) for CFS sleep dysfunction. We have each found the right medication and dose for our individual needs.

In an odd coincidence, Jamie stayed after school today to work on his science fair project. Guess what topic his group chose? The science of sleep and the effects of sleep deprivation on cognitive function! Isn't that the perfect topic for a teen with CFS? He has assured me that he will not be experimenting on himself! A couple of his night-owl classmates have agreed to be the guinea pigs.

I firmly believe that correcting my sleep dysfunction is a large part of the reason that I function as well as I do. It really makes a difference.

I hope that answers some questions and provides some guidance. If you're still struggling with sleep problems, I strongly urge you to look into treatment. My doctor was right - good sleep really does make all other symptoms better.

Pleasant dreams!

UPDATE 10/22/09:
Jamie's sleep was getting worse recently, and his doctor didn't want to go any higher on his dose of nortriptyline, so we added trazodone for him, too. The combination is working well for him, as it does for me, and he's now sleeping through the night again.

UPDATE 7/24/13:
Both of us are still sleeping well on the combination of trazodone and nortriptyline. For me, this is now over 10 years on these meds, at the same doses for the past 5 years or so, and still working very effectively. I do have a prescription for Ambien, but I only need to take it when I travel (and then only a half of a 5 mg pill).

Friday, September 11, 2009

Still struggling with the same crash. Two weeks now - that's pretty unusual for me and hopefully not the start of a trend.

My Mom came to visit for a few days this week. Even though I wasn't feeling well, I always enjoy her company, and it certainly helped to keep my mood up to have her here. I somehow managed dinner out with her and two friends, plus our book group. A very enjoyable evening, though I'm sure it didn't help my crash!

After dropping Mom off at the train station this morning, I spent the day on the couch under the quilt. Friday night now, with nothing ahead but some DVDs and lots of rest this weekend. You know how it goes - nothing to do but rest and wait...

Tuesday, September 08, 2009

Well, I'm finally feeling better again. That was a long, long week. I'm guessing that maybe some back-t0-school germs triggered my crash because it was far too severe and long-lasting to be caused by just getting up a little earlier or doing too much. I was still very sick all during our long weekend.

Despite my crash, we went to several social gatherings this weekend. I spent my days resting, then tried to tank up on salt, fluids, and supplements so I could manage to make it through our evenings with friends. Sunday night we went to a cook-out at the home of one of our boys' best friends. I felt my illness and otherness most acutely that evening.

In my younger days (pre-CFS and pre-kids), I was a party girl. I was pretty wild in high school and college, then I lived in New Orleans for several years which is, of course, party central. I have always been outgoing and extroverted. I love being with friends and meeting new people, laughing and talking and staying up late.

I think that's one of the cruelest things about CFIDS...that social interaction of any kind is so completely exhausting. Sunday evening - since I was already feeling bad to begin with - I really hit bottom. It was a fun party. We get along well with the boy's parents who were hosting the party, and I really enjoyed meeting all of their friends and neighbors. But I was very much aware of my illness and my different-ness all evening.

When we arrived, everyone was gathered in the kitchen, as they always do at parties. I knew I couldn't stay on my feet, so I sought out the only chairs nearby, in the dining room, but then I was out there by myself, with everyone else chatting while standing around in the kitchen. I got my glass of ice water (whoopee!) and went to the back deck to find Ken. It was just a few men out there, but at least I could sit and still be a part of the conversation. I settled myself onto the deck for the duration of the evening. No mingling for me, though eventually other people came outside and I did get to chat a bit.

I felt sicker and sicker as the evening wore on, but Ken and the boys were having fun, and I was enjoying the company. Dinner helped my energy a little, but then my stomach bloated and cramped - must have been some hidden dairy somewhere that I didn't notice. When we finally left at about 9:30, I had a headache so severe that I felt nauseous from the pain. I somehow managed to walk home and just collapsed into bed. I felt so bad and the headache was so awful that I couldn't fall asleep, until I finally took an Ambien. Monday, I woke with a severe sore throat, achy and exhausted, and had to spend the day resting. It seems so cruel and unfair a price to pay for just sitting around and talking to people.

I don't mean to complain. I'm grateful I was able to go at all (though, clearly, I should have stayed home!) It's just that the whole experience left me feeling so isolated and out of place, and I knew that all of you out there in the CFS blogging world would understand. It just seems so unfair that I can't even enjoy a glass of wine, yet I end up with a worse hang-over than I ever had in my old party days. It's as if I've lost a part of my identity.

Well, anyway, I'm grateful to be feeling OK again and am hoping for a much better week.

Thursday, September 03, 2009

I had such high hopes for this week! Craig went back to school on Monday, and Jamie had two half-days, starting Wednesday. I planned to finally start catching up on all the writing work I didn't do during our busy summer. Instead, I'm crashed for the first time in almost 2 months - probably from the early mornings that I'm not used to.

The past two days have been especially bad - sore throat, heart palpitations from OI, the works. I've had to spend my days lying on the couch - it's been a long time since that has happened! Meanwhile, the e-mails continue to pile up, unanswered, the errands are still waiting, and I'm feeling a bit panicked over having no writing projects in the pipeline (i.e. no income).

At the same time, the start of school for parents of kids with CFS means a bunch of extra to-dos - e-mails to explain CFS to new teachers, setting up meetings with guidance counselors for 504 plans, plus trying to get the kids to bed early so they won't crash.

I know from past experience that there's nothing to do but rest and wait (and try not to stress about all the undone work).

The kids are managing OK. Craig loves middle school so far - he says the days go by much faster with all the different classes. Craig is typically an early riser, but even he has had trouble with the earlier wake-ups this week. It's great that Jamie has only had two half-days because he has to get up REALLY early. Next week will be tough for all of us!

Now we have a nice 4-day weekend ahead of us to pretend that it's still summer! We have a lot of fun stuff planned with friends, so I hope I recover soon. Enjoy the weekend!

About Me

I'm a freelance writer who loves to read and cook. My husband and I have two sons, and we all enjoy travel and being outdoors. My older son and I both have chronic illnesses, but we focus on finding joy in every day!

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